Overview
A urachal sinus is a rare birth defect involving a small tube-like structure called the urachus. During fetal development, the urachus connects the bladder to the belly button (umbilicus) and normally closes completely before birth. In a urachal sinus, one end of this channel — usually the end near the belly button — stays open instead of closing all the way. This creates a small pocket or tract just under the skin near the navel that can collect fluid and become infected. Most people with a urachal sinus are diagnosed in childhood, often because the area around the belly button looks red, swollen, or drains fluid or pus. Some people may not notice any symptoms until an infection develops. The condition is sometimes called an umbilical urachal sinus or patent urachal sinus. It is different from a fully open urachus (patent urachus), where the entire channel stays open between the bladder and belly button. The good news is that urachal sinus is treatable. Surgery to remove the sinus tract is the standard approach and is usually curative. Without treatment, repeated infections can occur. With proper surgical care, most people recover fully and have no long-term problems. Early diagnosis and treatment lead to the best outcomes.
Key symptoms:
Redness or swelling around the belly buttonDischarge or pus draining from the navelPain or tenderness near the belly buttonA lump or swelling just below the belly buttonRepeated infections in the belly button areaFever when infection is presentFoul-smelling drainage from the navelSkin irritation around the umbilicus
Clinical phenotype terms (4)— hover any for plain English
Sporadic
Usually appears on its own, not inherited from a parent
Childhood
Begins in childhood, roughly ages 1 to 12
Treatments
No FDA-approved treatments are currently listed for Urachal sinus.
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Treatment Centers
8 centersBaylor College of Medicine Rare Disease Center ↗
Baylor College of Medicine
📍 Houston, TX
🏥 NORDStanford Medicine Rare Disease Center ↗
Stanford Medicine
📍 Stanford, CA
🔬 UDNNIH Clinical Center Undiagnosed Diseases Program ↗
National Institutes of Health
📍 Bethesda, MD
🔬 UDNUCLA UDN Clinical Site ↗
UCLA Health
📍 Los Angeles, CA
🔬 UDNBaylor College of Medicine UDN Clinical Site ↗
Baylor College of Medicine
📍 Houston, TX
🔬 UDNHarvard/MGH UDN Clinical Site ↗
Massachusetts General Hospital
📍 Boston, MA
🏥 NORDMayo Clinic Center for Individualized Medicine ↗
Mayo Clinic
📍 Rochester, MN
👤 Mayo Clinic Center for Individualized Medicine
🏥 NORDUCLA Rare Disease Day Program ↗
UCLA Health
📍 Los Angeles, CA
Travel Grants
No travel grants are currently matched to Urachal sinus.
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Caregiver Resources
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Family & Caregiver Grants
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Social Security Disability
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Questions for your doctor
Bring these to your next appointment
- Q1.What imaging tests do you recommend to fully map the sinus tract before surgery?,What surgical approach do you plan to use, and will it be minimally invasive?,What are the risks of surgery, and what is the expected recovery time?,How will you make sure the entire sinus tract is removed to prevent recurrence?,What follow-up is needed after surgery to check for recurrence or other urachal problems?,Is there any long-term risk of urachal cancer, and how should we monitor for it?,What signs of complications should I watch for after surgery?
Common questions about Urachal sinus
What is Urachal sinus?
A urachal sinus is a rare birth defect involving a small tube-like structure called the urachus. During fetal development, the urachus connects the bladder to the belly button (umbilicus) and normally closes completely before birth. In a urachal sinus, one end of this channel — usually the end near the belly button — stays open instead of closing all the way. This creates a small pocket or tract just under the skin near the navel that can collect fluid and become infected. Most people with a urachal sinus are diagnosed in childhood, often because the area around the belly button looks red, sw
How is Urachal sinus inherited?
Urachal sinus follows a sporadic inheritance pattern. Genetic counseling can help families understand recurrence risk and testing options.
At what age does Urachal sinus typically begin?
Typical onset of Urachal sinus is childhood. Age of onset can vary across affected individuals.
Which specialists treat Urachal sinus?
2 specialists and care centers treating Urachal sinus are listed on UniteRare, sourced from ClinicalTrials.gov principal investigators, published research, and the NPPES NPI registry.